CLL/Papillar thyroid cancer

Question

I have CLL and was just dx with Papillary Thyoird Cancer-one cm nodule on isthmus dx by FNA. I also have several small nodule on the right lobe and lumpy lymph node on my right neck. I have had extreme fatigue prior to the thyroid dx. I'm schedule for a total thyroidectomy and select lymph node removal next week. Doc says no thyroid replacement therapy for thirty days post-op pending scan for metasteses. I worried about the thirty days. Any idea on what I can expect? Should my treatment/monitoring include anything extra as a result of the CLL? I have also been diagnosed with active CMV and I'm one Valcyte for this. My only medications are 1450 mg of Valcyte and 25 mg of Atenolol. I am 48.

halojd · Answer

I had my thyroidectomy on Friday and was discharged from the hospital on Saturday.  My neck is still sore and swollen and I feel very lightheaded and unsteady.  One symptom I have had is quite strange.  I periodically experience vaginal warmth like I'm going to urinate but I don't. Is this normal?  Has anyone else experienced this?  Should I be concerned?

abby84 · Answer

I know how you feel. It is hard to get anyone to listen to you and you know this tiredness and other symptoms do not add up. why do doctors not see there may really be something wrong especially when the labs dont add up. i also have a 16 yrs old daughter and other kids. So it worries me to think something like this could go unnoticed and what would they do if I wasn't able to take care of them. If the doctors could only see our position. Instead of thinking oh heres another one Crazy. I am a nurse I know myself and I study alot. So I am not Crazy.


Goodluck I go tommorrow to check out a surgeon to biopsy my Nodules.

halojd · Answer

After I posted I look through this forum and I am AMAZED!!!! by the fact that all of the symptoms I have - fatigue, brain fog, memory and cognition problems (can find the right words, tounge tripping over the words I speak(, joint and muscle pain-especially upon waking, never feeling refreshed after sleep are all symptoms I have had prior to the any of my diagnoses. WHY DIDN'T THE DOCTORS LISTEN TO ME? My life has change 360 degrees during the last three years and no one gave a damn until Dr. Lerner who just felt my thyroid and knew something was wrong. WHY ARE THE BLOOD TESTS THE ONLY THING THEY RELY ON. I am so ANGRY and hurt that I lost three years of my life and no one gave a damn. I THOUGHT I WAS CRAZY. I was such an energtic and active person - so organized and together and now one look at my house would make you think what in the hell is she talking about. I would literally become ill is my house was not clean and in order by Monday morning when I left the house for work. The only one who knows how much my life has changed is my 15 year-old daughter and she has been great! I am so thankful for her but I am very angry that I have to go through this with really no help until recently from the medical profession. Something is seriously wrong here.

halojd · Answer

Thank you all so much.  I am actually looking forward to the surgery as I am so sick of feeling the way I have.  I wanted to ask you two more things.  As far as I know my thyroid  levels are all normal.  The Dr.discovered what he thought was a goiter but levels were normal. Is it possible to have the fatigue with normal thyroid levels and this cancer.  The CLL and CMV also cause fatigue but with the CLL one would expect anemia and I, thankfully, don't have it so my hemo/onc says the fatigue is not from the CLL.  My CMV doctor says fatigue is from CMV but I want to know about the thyroid.  I have done some of my own research and based on that I have seen I  think it is appropriate to have my adrenal glands checked out -something the scan will probably pick up I guess.  Did either of you have  follow-up or work-up that included adrenal gland function testing? Any information you have would be appreciated and again thank you.

ChitChatNine · Answer

You have some hormone stores that'll last the first 2 weeks and then week 3 and 4 like Kipland mentioned will probably feel the worst.  I have had small micros found but did not need the RAI so cannot tell you first hand, but any ? about the surgery I have had a partial 2 yrs ago.

C~

kipland · Answer

I'm not familiar with CLL or CMV, but can share with you what to expect after your surgery.  They most likely will follow up the surgery with radioactive iodine to kill off any remaining thyroid tissue.  Your tsh has to be over 30 to have it done, which is why they're not giving you meds yet.

Everyone is different, but I started feeling the symptoms between week 3 and 4.  If you look up symptoms of hypothyroidism, you may have one or more of the symptoms - or you may not.  I was hoping for the "may not", but wasn't quite so lucky!  I actually went 7 weeks without meds after my surgery.  I felt pretty nasty by the time I had RAI, but it only took about a week on the meds before I started feeling better.

As far as treatment or monitoring with your other diseases, I would definitely ask your doctor about that.  Good luck with your surgery and please keep up posted.

Lori